Sunday, October 21, 2018

I haven't fallen off the edge of the eath

Just in case you were wondering, I am still around.  Life has just gotten busy.  I think I need to put "write on blog" on my calendar because then it will get done.  PT and doctors appointments have become my full time job since my last big hospitalization.  During my last episode of paralysis, it turns out my bowel was damaged, so I have pelvic physical therapy once a week, pool therapy once a week and regular PT once a week.  I go for my weigh-in at Ideal Protein once a week and usually see the chiropractor while I am there.  I almost always have at least 1 doctors appointment each week.  The week of Halloween, I have 3.  Having a chronic illness is a full time job.  I have to factor in a lot of drive time too since we moved out to Del Valle.  All of my doctors are at least 25-30 minutes away and a few are 40 minutes away.  I would really love to have a more energy efficient vehicle.  Handicap vans are not the most energy efficient things.  They are always big and the equipment weighs a lot.  I really didn't think I would still be driving a van when  I didn't need it to chauffeur kids around.  I would love to be able to drive a smaller car.  I am so grateful to have this van though and that we were able to inherit it from Stan's mom when she passed away.  These handicap vans cost double the  cost of a regular van.

Last week I  had my 4th hospitalization for the year.  I have broken 2 personal hospitalization records this year.  Not somethings I was trying to do.  First, longest hospitalization - 5 weeks.  Second, most hospitalizations in 1 year -4.  My previous record was 3 and all 3 of those were fairly short, like 2-3 days.  This year I have spent over 8 weeks in the hospital.  Now I bet you want to know why I was in the hospital.  It was actually planned.  I had to have my baclofen pump replaced.  The battery was almost dead so we wanted it done while my deductible and  out of pocket max were still met.

This surgery was much easier than the initial placement.  Only had to be in the hospital over night.  I was in the hospital then in rehab for 2 weeks last time.  The worst part of the recovery has been  unrelated to the surgery.  I have a condition called autonomic dysreflexia.  It developed after my 2nd paralysis episode.  This means the autonomic nervous system doesn't regulate itself the way it should.  The autonomic nervous system controls all of the nerves that are involuntary like in your heart, blood vessels, lungs, sweat glans, hair follicles and many other areas.  This disorder is common after spinal cord injuries and can happen in things like Guillan Barre or multiple sclerosis.  My paralysis episodes are very much like Guillan Barre, they just don't fit the diagnostic criteria because of some of my test results.  So, after we got home from the hospital, my skin started feeling like I was sunburned everywhere.  I have had this a few times but not  really since I started IVIG.  This is the one symptom I have a hard time dealing with.  I can never get comfortable.  The breeze from the ceiling fan makes my skin burn.  There were some strange things with it though.  I was getting goosebumps everywhere off and on.  There was a lot of pain associated with the  goosebumps.  They are the worst on my legs.  Also my legs feel like I haven't shaved in several days despite the fact that I have shaved twice since my surgery.  It's like the goosebumps are pushing the hair follicles out more.  If  anything rubs on those stubbly areas, it hurts even more.

I have found nothing that gives me any lasting relief.  Stan gave me a blessing and commanded the nerves to begin healing and the pain to ease.  I have pleaded with God to take away the pain multiple times and asked him what I needed to do to get rid of the pain.  I've broke down into tears a couple of times a day.  Early Saturday morning I really broke down but decided I needed to approach this a bit differently.  I prayed to god and told him I was going to turn this over to him.  I asked him to help me have faith in the blessing Stan gave me.  Then I asked him to inspire me that  I would know things that would prevent the  pain from getting worse.  I immediately received some very clear instructions.  These instructions not only kept my pain from getting worse, but I actually experience some improvement.  Sleeping has been difficult for me, but I have been able to sleep on my side better than I usually can.  The really strange thing is that I wake up hot but it I remove the covers, or even just the top blanket,  then I get goosebumps and I am in more pain.  I am really hoping my AD was just triggered by the surgery and the pain.  I really don't think I could deal with this on a daily basis.

Wednesday, August 15, 2018

Out in the real world

Today is my wonderful hubby's 50th birthday.  Happy birthday Stan.  He is the best husband a woman can ask for.  We had a birthday party for him on Saturday.  It was pretty casual.  We had music playing, we played board games and ate pizza, queso, cake, chips, and a veggies (the veggies were more for my sake than for anything).  It was a lot of fun and exactly what he wanted.

I have been out of the hospital for 12 days now.  It's kind of strange going from rehab to home PT.  I was getting 3-4 hours of PT/OT every day in rehab.  Since I have been home, I have had 2 - 30 minute sessions at home with the home health PT.  Now I am having to do a lot more for myself than I was at the rehab hospital; fixing  my own meals, driving myself to my appointments (I have hand controls and a handicap van for those who don't know), taking care of all my own personal hygiene without any assistance from anyone, cleaning up after myself, and sometimes others.  My family helps me a lot with the cleaning though so I am not  having to clean house.  My boys take care of the dishes, Stan helps with the laundry, especially washing/drying it which is more difficult for me to do since getting my wheelchair into the laundry room with the laundry baskets can be a bit crowded, I have one of those robot vacuums to take care of my floors.  Some things just get neglected for now, such as cleaning the shower ; It can just wait.  It's not that bad yet.  I think all the things I do at home that I don't do in the hospital take the place of the extra rehab.  I do have a home exercise plan that my OT/PT gave me before I left but my home PT doesn't want me to do all of that every day.  I stretch most days so my muscles don't get too tight, a problem that people  with spasticity can easily have and which can make walking difficult if it gets too bad.  Plus after sitting in the chair all day, it feels good to stretch out and not be scrunched up all the time.

Today in PT I made some progress.  I have been doing some standing at my counters and at the sink such as when I  brush my teeth.  Today, I used my walker and was able to walk from my sink to my fridge, a distance of about 5 feet.  I did that twice.  I realize I walked 5 feet in rehab, but I did that in the bars.  It is much harder to do that with a walker.  The walker isn't as stable as the parallel bars.  I am getting more muscle activation in my legs.  I am hoping to start getting even more.  I just had another IVIG infusion on Monday and Tuesday.  I usually get a big surge of improvement after my infusion so I am hopeful that I will start to see more improvements.

I saw my PCP today for a follow-up from my hospitalization.  Most of my follow-up issues are going to be for my neurologist, Dr. Westgate.  I'll see her in September.  My biggest concern for my PCP is regarding the autonomic dysreflexia.  Autonomic dysreflexia (AD) is a disorder that can happen in people with spinal cord injuries, and less common in people with Gillian Barre, MS, CIDP and other neurological disorders.  This occurs when there is damage to the spinal cord that causes the message from the brain to other parts of the body, especially the bladder and bowel, to not be relayed properly.  It gets all mixed up and instead of your brain receiving the message that your bladder is full or you need to empty your bowel, your BP spikes up, sometimes to dangerously high levels.  Bladder infections, tight clothing, infection, skin irritations can all cause this.  For me, bladder fullness is definitely a trigger.  I was very concerned about a UTI triggering it since I don't always know when I have one.  She has given me some quick acting BP medication to bring my BP down if it goes over 160/95 and won't come down.  Then I  need to seek medical attention ASAP.  I feel better knowing  I have something  to bring my BP down should it skyrocket.

I am starting to feel more like myself again on the inside.  Even though the 1st episode of this ascending paralysis was worse and my hospitalization in the spring was longer, this time was harder on my emotionally.  I went though a depression that I didn't have the 1st time.  I think because when it happened in  the spring, I just dealt with things as though this was an isolated incidence.  This second time, I realized if this could happen a 2nd  time, it could happen more than that.  I was still not fully recovered from the 1st time.  I could walk again but I was still very weak.  I think that  is why I got so much weaker so much faster.  I am just hoping 2 things 1) this doesn't happen again or 2) it waits until I can at least recover from this episode before it happens again.  This is especially since I have to have my baclofen pump replaced in October so I  don't want to be recovering from surgery and have another episode.  Also I only have 60 days of inpatient rehab per calendar year.  I have used something like 38 days, so I am running out.

Sunday, July 29, 2018

Crappy day today

After having such a wonderful day on Friday, today has been a really crappy day.  It all started yesterday actually.  I really struggled yesterday with feeling very emotional.  Going out on a pass on Friday was wonderful but coming back into the hospital was so hard for me.  It made me so sad, almost depressed.  I tried to put on a happy face and just do the best I could but I really struggled.  It was made worse by the fact that I had no therapy on the weekend.  Typically, you get therapy the 1st weekend you are here, then the following weekend it just depends upon census and the therapist that  are here.  The unit was pretty full  and there are a lot of therapist on vacation, so I got no therapy this weekend at all.  I just kept thinking there is no reason for me to be here.  I was on the verge of tears all weekend.
     Then yesterday I "walked" Stan to the car when he left the hospital for game night.  I was outside for about 20 minutes in the heat.  When I came back in, my BP was elevated to 160/108 and my HR was 118.  I was having  palpitations.  After about half an hour, things were back to normal.  It happened 1 other time.  Then today I had an asthma attack and had  to have a neb treatment.  That had my heart racing but I knew it  was only medication side effects.  This morning, I woke up with really bad abdominal pain in my right upper quadrant, along with some tenderness.  The doctor ordered an ultrasound and it was normal, although it took all day to get it done.  I had to be NPO for 6 hours before it could be done, but they took 8 hours to get here to do it.  I was hungry and grumpy all day long.  It was not pretty.  I had no further palpitations but I did talk to the attending about it and he wants to get a STAT EKG if it happens again.  I have had a full cardiac work up so I  don't think it is any big deal.
     Now I have had my US, I've been able to eat and I feel a little better so  I am not  as grumpy but I  still l feel like I am on the verge of tears again.  I was a total party pooper when it came to the family games.  I hung out with Stan and the boys.
     I think it is time for me to be a little more pro-active with these feelings of depression.  I need to start talking with Eden again, even if it is over the phone for now.  I need to be journaling.  I also need to let go of  some expectations.  I have been having a hard time with the fact that I get no visitors except my immediate family.  Stan and the boys, Rachael and Zack.  No one from church has visited.  My own brother hasn't even visited me, nor did he visit me the last time i was here.  .  He doesn't call me either.  He is such a weenie.

Thursday, July 26, 2018

I walked today

Today was a big milestone.  I walked 5 feet today both in the pool and in the therapy gym.  In the pool, I could only take tiny steps.  The water helped me move my feet a lot.  Later in the day, my therapist  had me try to walk in the gym between the parallel bars and at first I couldn't move my feet because I had too much friction on my feet with my shoes on.  Then she took a piece of paper and wrapped it around my toes and taped it to my shoes.  That allowed my feet to easily slide across the floor with very little friction.  After that, I  walked about 5 feet holding onto the parallel bars. 

On Tuesday, my rehab doctor, Dr. Latorre, met with my PT and my PT and my nurse for that day to discuss my progress and plan for discharge.  He set my tentative discharge date for August 3rd.  This hospitalization will end up being a total of 3 weeks, 1 week in the main hospital and 2 weeks in the rehab hospital.  Stan was really hoping that I wouldn't have to be in rehab as long since I was just in rehab only 3 months ago.  I learned a lot of skills that I would need to use while I was weak.  However, I was too weak to use many of those skills to start with.  I couldn't sit up when I 1st got to rehab so I couldn't  even transfer with the slide board.  I had to be moved with the lift.  Now I can transfer from the bed to chair and to the toilet by doing a stand and pivot.  I put my legs in the position I need the to be, stand up and  turn my body.  My legs don't move at all during this type of transfer.  My arms do most of the  work.  It's basically just hopping from the bed to the chair using my arms for support.  Going from my chair to the toilet, I use the grab bars next to the toilet to hoist myself up and I swing my hips over.  It's getting easier to move this way each day.

Tomorrow Stan and I  will celebrate our 27th wedding anniversary.  I am so grateful to have such a wonderful man for my husband. He has been  my rock through the last 11 years as I have battled MS and  now whatever this latest neurological illness is.  Our marriage is stronger now than  it ever has been.  I can honestly say that we have never had a fight.  We have disagreed on things and  had discussions about them, but we have never had a fight about them.   Dr. Latorre is giving me a pass tomorrow so I can leave the hospital for a little while so we can actually celebrate.  We are going to go out to eat somewhere, probably Joe's Crab Shack, then we haven't figured out what we are going to go do after that.  We may go home for a little while before we have to come back to the hospital.  We have to be back  here before midnight.  We are going to leave as soon as my therapy is finished tomorrow.  I'm hoping they have me scheduled earlier in the day rather than going late into the afternoon. 

Sunday, July 22, 2018

First weekend of rehab

I transferred from the main hospital over to the rehab hospital Thursday night around 6pm.  I was a bit miffed after I  called the insurance company and they told me on Thursday afternoon that they had only gotten the request for rehab on Wednesday afternoon.  The order for PT eval was written on Sunday afternoon.  It wasn't actually done until Tuesday. 

Friday I had all of my PT/OT evaluations done.  I have a lot of work to do.  My trunk and arms are very weak.  My legs are both paralyzed still.  I can't move from the waist down.  I'm not sure how long I will be here.  Probably at least a week.  I had regular therapy on Saturday.  It was decided I didn't need speech therapy for swallowing issues.  I still have some minor swallowing issues but they believe they are from reflux problems combined with a little bit of swallow dysfunction.  They don't  think they can do much with speech therapy until I get my reflux problems under control.  I have been on  several medications to control it and nothing seems to be working.  It seems to never been under control. I have an appointment with a new ENT who specialized in laryngeal-pharynx reflux.  Maybe he can get to the bottom of the problem.  I am almost wondering if it is time to consider surgery for my reflux.

I also got to take a shower yesterday for the 1st time in 8 days.  I had had sponge baths and used dry shampoo but that just isn't the same thing.  My hair looked so gross before I got into the shower and it felt even worse.  I had to even change my pillow case because it felt grease from my hair.  It was disgusting.  The last time I had washed my hair was when I colored it, so my hair dye got all over the towels.  When I  had my kids, the hospital nurses tease you that you lose all your dignity and you will show your body to anyone after you have a baby.  I argue that rehab is absolutely worse than having a baby.  You have to have so much help getting dressed, moving from the wheelchair  to the bed/chair/shower/toilet, pulling pants/underwear up, etc.  The staff here gets really used to it, so it isn't unusual for someone to be sitting in a wheelchair butt-naked when the staff helps the dry off, get dressed etc.  The "staff" can consist of therapist, therapy assistants, nurses, techs, and just about anyone else.  The only person who hasn't seen me naked while I have been in rehab has been my doctors.  Sorry for the TMI.

Another TMI topic is my catheter.  I was hoping I could get it out when I came over to rehab.  In general, Dr. Latorre doesn't like his  patients to have indwelling catheters in and likes to get them out as quickly as possible.  He did last time.  This time, he isn't rushing it.  Since I can't sit up on the toilet on my own yet and my hands are still weak, Dr. Latorre wants the to get a little bit stronger before he takes the catheter out.  This thing is driving me crazy.  I really want it out.  The plan is to try to take it out on Monday and see how I do without it.  I have to use a catheter on a regular basis anyway but I just drain my bladder and don't leave it in place.  The OT didn't feel like I had the muscle control in my hands to be able to insert the catheter right now so thought I needed to continue to have the indwelling catheter.  She also felt I didn't have the upper body control to sit up on my own to be able to use the I&O catheter.  I've used it laying in bed before, I just have to have extra help since I can't see when the container is full or the catheter stops flowing.

I hope I will  get to start pool therapy tomorrow.  I get so much progress from being in the pool and I don't have to worry so much about my upper body weakness and gravity and falling.  I can actually work on my legs and my core without worrying about falling.  I can do so much in the pool that I can't do any where else.

As much as I hate being in the hospital, I'm glad I don't h ave to be out there in the heat.  Yesterday, Stan and Rachael were here visiting and we went over to the gift shop.  It was 105 outside at 4pm.  The heat index a that time was  108.  We never left the shade so I never felt the full effects of the temperature.  Today,  the actual temperature is  suppose to be 108.  It's 2:55pm right now and it is 104 outside.  It eels like 108-109.  It has been a really, really hot summer.  We have had over 35 days that have been over 100 degrees so far this year.  We haven't even hit August yet.  August is going to be a scorcher.

I want to again thank everyone for the prayers given on my behalf.  Thank-you to those of you who put my name on the prayer roll in the temple.  If you read this blog, let me know.  Leave a comments just to say HI.  I feel like no one is reading this except my dad because he tells me he reads it.

Wednesday, July 18, 2018

I almost forgot

I almost forgot to post about my weight loss milestone this past week.  I have hit the 70 pound lost mark.  Actually, I am down 72 pounds.  I have about 25 pounds to go.  Here is a photo of me at 247 pounds.  I took it the day I started Ideal Protein.  My "BEFORE" picture.
Here is a picture I took the other day at Target when I tried on this dress. I wasn't sure of  how it looked on my, especially the stripes, so I sent Stan a picture for his opinion.  It is a size medium.  The clothes I am wearing in the above photo are a size 2XL top and a size 22 jeans.  I kept this entire outfit so when I am done, I can put it on and everyone can see how I will drown in it.  I am currently wearing a medium in most things, especially tops and loose fitting dresses or full skirts, and large in some things , like pants, especially if  they have a zipper.  Birthing 3 babies gave me big hips and a genetics gave me a big butt.  If it is a number size for pants, I need a 14.  I am aiming for a size 10 or 12.  I think losing 25 more pounds will  easily do that, especially since some of my 14s are starting to get a little bit bigger in the waist.  It's just the butt and the legs that are still more fitted. 

The stripes going in 2 different direction give this dress a strange look at my waist.  You can see my baby fat in the photo around my lower abdomen (from having babies, not being a baby) but you can see it because I am wearing my swim suit and it actually made that  part of my body stand out rather than acting like a girdle like I though it would.  It is much more flattering without the swimsuit under it.  You can also tell a lot in my blog photo.  My face looks so thin compared to my before photo.  After I  get out of the hospital, I want to take some better current photos.  I'm not going to  take the photos with my old fat clothes util I  have lost all the weight I  want to.  Also, Rachael and I can wear the same size tops, but not the same size pants.  I have a bigger butt than she does.  She has bigger boobs than I do though.

With the swallowing problems I have had this weekend, I have had more sugar in the last 5 days than I have eating in the last 5 months.  I have eaten about 10 containers of pudding since I've been in the hospital.  I got a bunch of Ideal Protein pudding and had Andrew pick it up today so I won't be having all that sugar so much.  I have to take my medication mixed in pudding or apple sauce, both have lots of sugar and I have to  eat a lot of soft foods, so i am getting a lot of puddings and yogurts with my meals.

I am finally ready to fall asleep I think.  I  have been up most of the night with pain in my legs and just general can't  sleep because I am in the hospital. 

Tuesday, July 17, 2018

Hospital day 5

I got out of the ICU last night.  We were hoping I could go straight to rehab, but they didn't get the PT eval done, despite it being ordered on Sunday.  It didn't get done until this afternoon as a matter of fact.  Hopefully insurance will approve rehab early tomorrow so I can get over to rehab and  not just have to sit here in the main hospital doing nothing.  Medically, I am stable now.  I am just soooo weak that I can't go home.  PT tried to get me out of bed today and we didn't get very far.  They brought me to the edge of the bed and had me sit up with lots of help.  Then the therapist let go and I fell backwards.  I had to  either be held up by someone else or lock my arms behind me.

I am am still paralyzed from the waist down but I can get my hips to  make tiny movements.  I can't get anything at all from my knees or feet.  My hands, arms and shoulders are really weak.  I can hold my cup, silverware, and feed myself.  I can hold my phone, control the remote.  I can't raise my arms over my head though.  My diet was advance today to something resembling regular food.  It is called mechanical soft.  Everything comes up from the cafeteria already cut up, as if I can't cut up my own food.  I still am eating a lot of things like yogurt and pudding and mashed potatoes.  Stan got me a big smoothie this afternoon.  I still have some trouble with swallowing.  I have to swallow 2 or 3 times to get each bite down and I have to take really small bites and chew it forever.  I was already a really slow eater.  When we go out to eat, I'm going to have to tell them to bring my food out 1st so we aren't there forever.  I have to have a swallow study some time  while  I am here.  They are going to stick a fiber optic scope down my throat and watch what happens while I am swallowing.  It doesn't really sound fun to me but hopefully they can figure out what exactly is causing my swallowing issues and give me some strategies to fix it or they can figure out something else to fix it.

I want to thank everyone that is praying for me and my family.  I am a firm believer in prayer and have a lot of faith that Heavenly Father answers prayers.